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14 year old just diagnosed with Crohn's disease

23 replies

HanHoggy · 27/02/2024 22:58

Looking for help really, feeling lost and desperate for information. We are in Ireland and there seems to be very little out there to help. My daughter 14 diagnosed today and stated on Prednisalone. She had her endoscopy and colonoscopy last week with biopsies and blood work and calprotectin is 1500. She is feeling pretty rotten

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Are your children’s vaccines up to date?
Teasie123 · 27/02/2024 23:11

@HanHoggy listen, if they've caught it early, there's so much they can do...my hubby never told anyone about his symptoms til we moved in together at 22. By the time he was diagnosed it was way too late. To be fair, he got a bag on and has never looked back. That was 28 years ago. We re still married and have 3 grown up kids. So no matter what, she ll be fine
It ll be hard and she ll have to look after herself bit she ll cope
Promise
X🤗🤗🤗

INeedNewShoes · 27/02/2024 23:15

Crohn's & Colitis UK is a good starting point for information. Here's their leaflet about Crohn's.

https://crohnsandcolitis.org.uk/media/ol1niezn/crohns-ed-8-final.pdf

I don't know if things are different in Ireland, but in England many hospitals have a specialist IBD nurse who is a useful point of contact.

Which hospital is your DD's care at?

The diagnosis can feel overwhelming at times and there is lots of scary information out there on the internet. It's best to to stick to good sources of information like Crohn's & Colitis UK, Patient Info, and the NHS site, and for now steer clear of social media support groups as the most vocal people tend to be those whose lives are affected the most.

I have ulcerative colitis. I was diagnosed 15 years ago and it has had very little impact on my life over all so far, despite a couple of severe flares. I work full time, I am a parent, I am fit and active and healthy the vast majority of the time.

It can take a while (weeks/months) for treatments to be tried and adjusted for IBD but your DD will get to a place where things are much better for her than they are right now.

https://crohnsandcolitis.org.uk/media/ol1niezn/crohns-ed-8-final.pdf

HanHoggy · 27/02/2024 23:19

Thank you both she has thought to have celiac disease but found not to and have Crohn's instead. @INeedNewShoes She is under Bons Secure Hospital. I guess it's just about time! The pain is terrible and the bleeding is scary for her and us.

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INeedNewShoes · 27/02/2024 23:28

https://www.tillotts.ie/wp-content/uploads/sites/24/2021/03/introduction-to-the-inflammatory-bowel-disease.pdf

This suggests that Bons secours hospital does have IBD nurses. They tend to be a very useful point of contact and good at explaining the condition.

Try not to worry too much about the bleeding. It's scary when you're not used to it. The steroids (Pred) tend to get on top of things fairly quickly, especially on a first flare up.

https://www.tillotts.ie/wp-content/uploads/sites/24/2021/03/introduction-to-the-inflammatory-bowel-disease.pdf

HanHoggy · 27/02/2024 23:31

@INeedNewShoes they do we are waiting to hear from them we were only sent to them today so I guess they will call tomorrow. She has been bleeding on/off for a few months. Somedays are a lot worse than others sadly and she is drained.

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Remmy123 · 28/02/2024 09:18

Sorry to hear this. My son is 15 and has UC and is doing very well.

Please join the group 'UK parents of kids with IBD' on Facebook its a very supportive group x

HanHoggy · 28/02/2024 18:11

@Remmy123 thank you x I will join but I am not in the UK

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MumofCrohnie · 28/02/2024 23:19

Hi - as you can tell from my username my daughter, aged 13.5, has Crohn's too. We also hoped for coeliac - strong family history, 6 coeliacs but my DD got unlucky with Crohn's.

They attack it quickly to try to get them into remission. Have they not suggested 8 weeks liquid diet? That's standard first line treatment in England. Once she is in remission it will all feel much better, though it can take a while to get there. Once they have the diagnosis they get looked after. Second joining the parents group on FB. They are a very supportive bunch.

Nannyamc · 28/02/2024 23:26

My sister 85 was diagnosed 45 years ago..has had a few hospital admissions but as long as she sticks to diet she is ok.
Needs to be monitored constantly.

.

DodgeDoggie · 28/02/2024 23:26

that sounds tough going. Do you mind if I ask what her symptoms were

HanHoggy · 29/02/2024 14:37

@MumofCrohnie Aww bless her! She is the unlucky one! Thank you for reaching out! How is she doing now? Yes sorry they have we stated this yesterday. she hates it already but we have ordered plenty of protein flavoured drinks to help her. We had to wait for the delivery everything in Ireland is very slow paced. Thankfully we are not under the HSE and instead have health insurance thankfully.

I didnt think they would let me join but I have now joined just slowly getting to terms with all the posts. How did your daughter cope with the liquid diet? How were her symptoms?

@DodgeDoggie of course, she has been vomiting, weeks of loose or runny poo then constipated, belly pain, rectal bleeding, weight loss, tiredness, fevers every few weeks. They tested for coeliac first but that was negative

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MumofCrohnie · 01/03/2024 11:16

Hi @HanHoggy
DD did really really well on the liquid diet. Within a fortnight she was visibly so much better and she put on loads of weight. I forget but It was about a stone. It was hard and around 4 weeks in she got bunged up and had to go on movicol, we had to move to NG tube for the last 4 weeks as she loathed the movicol and was so bunged up she couldn't drink all her drinks. But it put her into remission which lasted 2 years and gave her time to grow 20cm! She's unfortunately recently started flaring again and we are having another colonoscopy in a few weeks.

MumofCrohnie · 01/03/2024 11:19

Her symptoms, btw, were the same as your daughter more or less, but she had constant diarrhea. Fevers every week or two for 24 hours, pale, thin, tired, then towards the time she was diagnosed she started vomiting randomly. Lost her sparkle, could barely walk 200 yards she was so breathless.

HanHoggy · 01/03/2024 14:00

Thank you @MumofCrohnie It's positive to hear she is doing well now! My daughter currently hates the liquid diet. Anything to make it better? Does your daughter get constipated much now? How did you help manage it? x

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MumofCrohnie · 01/03/2024 14:21

No she never struggled with constipation after the liquid diet.

We did a countdown of days on the liquid diet and she had boiled sweets of course.

Enterprisemummy · 07/01/2026 19:16

Hi HanHoggie, I know this is an old post but wondering how your daughter is now, my 5 year old girl os under investigation for ibd at the moment and to say I'm terrified is an understatement. Just looking for someone to talk to about this that understands the worry i guess, i started a thread but only got 1 answer and no replys after that.

MumofCrohnie · 07/01/2026 20:01

Enterprisemummy · 07/01/2026 19:16

Hi HanHoggie, I know this is an old post but wondering how your daughter is now, my 5 year old girl os under investigation for ibd at the moment and to say I'm terrified is an understatement. Just looking for someone to talk to about this that understands the worry i guess, i started a thread but only got 1 answer and no replys after that.

I am not the OP but my daughter is doing well. She started biologics in May of 24, she takes adalumumab. It's an injection once a fortnight. Since then she's been well - she's now taller than me - around 5'7, and about 9 1/2 stone.

It's a horrible disease, but the wait before diagnosis is the worst bit. Once they have their diagnosis the experts know what they are doing and work hard to get them into remission x

Enterprisemummy · 07/01/2026 20:47

Thank you so much for your reply and I'm so glad your daughter is doing well.
With my daughter she has only ever had around 5 days of pain upon waking followed by diarrhoea about a month ago. The only reason i brought her to doctor was because it was not typical of a bug of any kind, after a few bowel movements she was fine.
The doctor however, looked alarmed at the picture of her stool and ordered the calprotectin test which came back at 900.
So for dd, if the repeat comes back high then i guess we are looking at the very start of this..i guess I'm lucky that if it is an ibd, it will be caught in the very early stages. Never had blood or mucus or any other symptoms.

What were your daughters symptoms at the very start if you don't mind me asking..like were there subtle signs before it became obvious?

MumofCrohnie · 08/01/2026 23:58

It's hard to know when it started - I think it can be quite insidious at first, and I guess DD was embarrassed and never said she had diarrhea. She didn't go often - only a couple of times a day - and didn't seem to have pain.

I noticed the toilet was often "spattery" and that one of the kids was obviously having loose poos, but wasn't sure who. Then DD had quite bad breath and she stopped growing and just didn't put on weight. My DH had been a skinny kid so we put it down to that, but then she stopped wanting to walk to school around Feb/March of year 6, having been so excited about it at the start of the year. She started really struggling to get up in the mornings, and was always tired. Her hair, which had been really pretty, looked dull and brittle. She would cry in the evenings just from being so tired. She was always a bit warm - her standard temperature was about 37.2.

Then while we were waiting for her appointment she started spiking random fevers - for 24 hours her temp would shoot up. Then she began vomiting randomly. She would get super breathless walking any distance. Also if we went out walking she would desperately need the loo.
She stopped eating almost everything except mashed potato with gravy, chicken nuggets, wotsits. Which is funny as now she actually has a very adventurous palate and loves spicy food.

It was a horrible time, looking back. I remember seeing her skipping along two weeks into the liquid diet and being so bloody grateful, as by the time she was diagnosed she could barely walk up a staircase.

After she was treated her "normal" temperature went down to 36 like everyone else. Now I think she was probably running a low fever the whole time.

Enterprisemummy · 09/01/2026 10:24

Oh wow, that must have been so worrying for all of you, not knowing what is going on must have been torture, i am so glad she is doing ok now, although I'm sure the worry never fully goes away.
I am really struggling mentally with it all. I am normally so logical but this has certainly tgrown me to the point that I'm finding it really hard to get through each day..jist waiting and trying to tell myself that if it turns out to be ibd that we will manage. Just so hard to imagine my 5 year old having to go through any of this.
I go through phases of worrying about different things..at the moment I'm worrying about how on earth i would get her to drink the prep for the colonoscopy or the liquid diet for 8 weeks. She has point blank refused anything but water and oat milk her whole life and i know it seems silly but i just can't get my head around that (today).
As i said, at the moment she is symptomless and i am grateful for that but i find myself almost looking for symptoms, and as well as waiting for the repeat testing to be done, i geel like i am waiting for more symptoms to start, analysing everything, even normal childhood things like passing wind. i feel like a crazy person. Anyway, sorry for the rant and thank you for the replys, it helps to here that even if it is, that eventually everything will be ok (ish).

Enterprisemummy · 09/01/2026 10:25

Sorry, lots of typos there.

MumofCrohnie · 09/01/2026 13:13

Not managing the liquid diet is common - they can have it through NG tube (my DD did for the last few weeks). They aren't hungry though, and they can have lemonade and clear boiled sweets for crunch.

Have you joined the Facebook group "UK parents of children with IBD" or something very similar? It has Lego people as the banner image. They are so very helpful and supportive. It doesn't matter if you aren't yet diagnosed.

Enterprisemummy · 09/01/2026 13:44

Yes thank you, i have tried to join but it is still pending..maybe because i am in ireland..I'm not sure.

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